Dementia Support Line
Real stories
A dementia poem about my mum and care home restrictions
Jane has written a heart-breaking poem about how coronavirus has affected her and her mother, who has dementia. She shares her worries about her mum's quality of life when there were visitor restrictions in place for care homes.
Jane used to visit her mum, who is living with dementia, every day in her care home. When the outbreak of coronavirus hit, however, all visits had to stop.
Like so many other people, Jane watched as the effects of social isolation caused her mum’s dementia to worsen day by day.
Jane has written a poem about her experiences, highlighting so clearly what it has been like not to be able to visit and care for her mum as she used to.
I’m losing my mum to Covid
I’m losing my mum to Covid,
but not as you might think.
It’s been four long months now,
but not as you might think.
Mum has vascular dementia,
I’d visit her every day.
But now because of Covid,
they are keeping me away.
Mum is my 3-year-old child,
she just doesn’t understand.
It’s a very cruel disease,
why I’m not there holding her hand.
At the very beginning,
I stayed away to not tempt fate.
Her physical health was frail,
and we needed to isolate.
But as the days turn into months,
her quality of life is fading away.
It feels like our last precious moments,
have been truly stolen away.
I was her eyes and ears,
when her hearing aids were left out.
She was trapped in her own little world,
and couldn’t hear me shout.
Or hearing aids were in,
but the batteries were dead.
Or batteries ran out,
so sounds couldn’t reach her head.
We’d watch repeats of NCIS, we’d watched many times before.
She “watched” through closed eyes.
I squeeze her hand and stroke her cheek.
She smiles a rare smile and speaks a rare word – a real prize.
I got the dreaded phone call,
just after I’d woken up.
“Mum's collapsed”, “She’s stopped breathing”,
“Paramedics are here.” Was this it?
My heart went into overdrive,
what had they just told me?
What had really happened?
Please, please tell me.
I spoke to the paramedics,
gave them her full history.
I said it sounds like Vaso vagal,
so it’s not really a mystery.
Lockdown put aside,
I rushed over to take a peek.
Gowned and masked I sat by her side,
held her hand and stroked her cheek.
She recovered soon after,
her breathing hadn’t stopped.
It was just very shallow,
her pillows need to be propped.
Every day I dread that call,
jump when the phone rings.
I know she’s 94 and has had a great life,
but it’s not time for her to have wings.
Mum rallied again,
she’s a real fighter.
Beaten infection after infection,
but her weight is much lighter.
How long can she survive,
and can her frail body withstand?
As I long to stroke her cheek,
and sit and hold her hand.
I talk to her every day,
but mainly she just listens.
On a good day I get a few words,
and my eyes truly glisten.
We’ve tried FaceTime and Skype,
but the signal is not good.
She’s just not sure where to look,
and why we are not there – we would if we could.
I don’t want her to think she’s forgotten,
but I know she won’t remember my calls.
I need to know I’ve done all I could,
to make her last years happy, within her four walls.
After ten long weeks I can visit,
20 minutes will be my allocation.
And we can chat and smile,
at least it’s less isolation.
But reality was very different,
open your lovely eyes Mum, look at me.
“Look at these lovely roses,
I’ve picked them from the garden."
"Please talk to me, please look at me,
I can’t come back for another month.”
This is our only time together,
but Mum slept on exhausted.
After 20 minutes they wheeled her away,
I was openly sobbing, at the chance we’d missed.
And nagging thoughts “Would I see her again?
Would this be the last memory – not to be kissed?”
I’ve written pleading for more access,
but both requests were denied.
20 minutes once a month,
seems worse than a prisoner, I cried.
My mum has been abducted;
she’s been locked away.
Will the police or my MP help me,
what about our say.
Covid is not going away,
for “anytime soon”.
Will mum still be locked away,
alone in her room.
“Dementia patients 'deteriorating' without family visits”,
Alzheimer’s Society say.
They have written to the health secretary,
but still no change today.
How many more families,
will suffer loss and death apart?
This whole situation,
it just breaks my heart.
Will you help us Cure the Care System?
Let’s make sure that people with dementia are able to access the care they deserve, when they need it. Become a campaigner today.
Jackie buchanan
saysI understand every word we are going through the same. My mother in law had a fall and was taken to hospital. My daughter and I have cared for her for 5 years. They said she was refusing food she needed prompting to eat. Then they said she was constipated if she’s not eating and they haven’t got the time to feed her my daughter ended up going in each day with PPE at lunch time or tea time making sure she eat 1 meal and drank plenty of water as they were saying she hadn’t drank much she needs prompting. They said she was going into respite for 2 weeks and would be assessed. She had to stay in isolation in her room for two weeks. 6 weeks later 15 mins a week visit for 2 people face time keeps getting cancelled. They don’t charge her phone up it’s just that voice you want to hear if nothing else even though you can’t make out what’s she’s going on about it’s really hard now we found out yesterday the home has gone on lock down with no explanation take care x